October 24, 2016 at 9:54 pm #83663lainyParticipant
Patricia, nothing about this cancer or treatments is normal. 2 people can have the same diagnosis yet take to the same treatments differently. We call CC our roller coaster ride as one day is up the other is down. The first lesson is to learn to be very strong, You never know how strong you are until “strong” is the only choice you have. The more you read the better advocate you become. We also have a SEARCH engine at the top of the page and if you type in 1 -3 words many posts will appear on that subject. My husband was treated here by the best ONC who has retired. If you ever need to get a 2nd opinion which we highly believe in, contact the Ironwood Cancer Center at Chandler Hospital. That used to be his office. What part of town do you live in, I am in Gilbert.
Here is also a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/October 24, 2016 at 7:51 pm #83664redParticipant
Thank you for your reply, Lainy! You immediately made me feel right at home and welcome here. We are from Phoenix, A Z. My husband is now being treated at MD Anderson Cancer Center here and we are extremely happy with his Oncologist and the care provided. I agree that worrying is of no benefit to anyone and that living with a positive and honest attitude is the best approach to all of life!
My husband is now five days from his first chemo treatment and for the first time is feeling fatigue and that is not a normal feeling for this very, very active man. I told him that others on this board find that a common effect from chemo and if that’s all there is to tolerate, then that’s not all that bad. I must say, though, that the day of and the first three days after his first infusion he was so hyper and felt incredibly energetic. I wonder if that is normal. I rather think that it is. I’d appreciate other responses on that. In two days he will have his next infusion so we’ll see if the same pattern appears.October 24, 2016 at 6:17 pm #83665lainyParticipant
Dear Patricia, CONGRATULATIONS on your husband’s surgery, Miracle of Miracles! As you know by now it is the ultimate goal for every CC patient.
You bring back memories to me, when my Teddy was DX he had terrible itching for 3 weeks while I never noticed his color slowly changing. At first we thought he had become allergic to tomatoes. What!! A Sicilian allergic to tomatoes? Then I thought it may be the detergent I was using. When the DOC said he was jaundiced I said, “You know I don’t like you in yellow!”. What did we know? Right? Reading brings knowledge and we now have so much more to read than we did 10 years ago. My husband never read here either but I did tell him about others and what was happening.
It is normal to worry but I felt why use this valuable time for worry? Try to be as normal as you can and I am a true believer that a patient has the right to know what is happening and what may come. Letting it all out in the open can sometimes cause a cathartic release so that you can continue forward because life is for the living! We talked about CC a lot and life and beyond.
You can turn your Birthday in to a celebration of life as that was the day hubby began to live again. What you are going through is so normal.
Where are you from and where was he treated. KUDOS to his wonderful Doctors! Don’t be a stranger now and please keep us updated on his progress. P.S. I am glad you joined us as you will find the most loving, caring and smart people right here on this Board.October 24, 2016 at 5:01 pm #10316redParticipant
Finally got on to register with your sight and I’m so happy to be here! My husband was diagnosed on my birthday (July 9) and you can be sure that I won’t forget that birthday! After a week of stomach aches, he consented to be taken to the ER in the middle of the night. It was there that the ER doctor saw that he was jaundiced and suspected the bile duct blockage. (I thought he was just tan, as usual. I know, stupid!) Anyway, after four days in the hospital and multiple tests, he was scheduled for surgery two weeks later for a resection. We both realize how fortunate he was that it could be done! He was ten days in the hospital after the surgery and upon his return home, he suffered an extremely painful recovery. But lo and behold, two months after the surgery, he is doing well and has gained back half of the twenty five pounds that he lost. He is doing his 50 push ups and kettle bell routine every morning and feels wonderful. He just started chemo (gemcitabine/cisplatin) last week and has not had one bad side effect. We feel very blessed that it all has progressed so well but still worry constantly about what is to come. (That’s definitely me talking because I’m a professional worry wart.) Thus one of the reasons for my post: I want to be a good caregiver but not a “mothering, smothering” caregiver. I read this sight all the time as well as many articles as I can find on the subject of cc. Do I read too much, I ask?? My husband doesn’t read anything related to his disease at all, by the way. The question then becomes how much information do I tell him or not tell him? I know someone can give me their two cents (or more if so inclined.)
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